Complete overhaul of supportive housing needed! Please read about Satsuma Neighbour!

[SaltandVinegar10]

Hi, I've just replied on a thread from a few days ago about supported housing etc but thought I'd make a new post about it.

My son is nearly 28, autistic and with a moderate learning disability. He is fairly independent but is vulnerable and has support needs. We live in London and he still lives at home with us because the options are just not suitable.

I have set up a charity/campaigning group (our CIO status is pending) called Satsuma Neighbour satsumaneighbour.org/. From everything I read and all the families I know who are a few years ahead of us, and all the stories (so often very negative) I hear, some fundamental change really needs to happen. 'Inclusivity' is such a buzz word in schools, but when our children become adults 'inclusivity' completely vanishes. Particularly when it comes to housing. And our children are going to be adults for far longer than they were ever children!

So it's about a radical change in thinking about housing for those who need care and support. But also how we ALL live, as I think it's fundamentally wrong to 'segregate' those with support needs into whatever supported housing model that exists. It's not good for them and it's not good for society and is why there is so much abuse (of varying degrees) in the system. If our young (and old!) people are not seen and meaningfully included, then they are not deemed to be worthy of the same level of care and consideration.

We want to build a supportive, properly inclusive, urban community (in London, where we live), for those with lower support needs, like our son, but there is no reason why this shouldn't be extended to those with higher support needs. And we have national aspirations that there be a Satsuma Neighbour community in every town and city in the UK. I have been having meetings with an organisation in America called OSG (Our Stomping Ground), set up by parents, and they now have 7 communities fully functioning. One of the young people is 'Emma' from the film 'The Reason I Jump' (a must watch if you haven't seen it!), who has very high support needs but she now lives in her own apartment within a building that is entirely inclusive where other people/families etc live alongside. She has care coming in but she is also totally accepted, understood and looked out for by her community. It can be done and change must happen here too. Please do have a look at our website satsumaneighbour.org/ and sign up to our mailing (and follow on Instagram @satsuma_neighbour_). We have a mountain to climb but we are climbing it! I cannot leave this earth with my fingers crossed that something will change/get better, as I don't believe it will. And even though my son has lower support needs (and won't need a residential care home), it is precisely this group of more independent young people who are prey to exploitation and modern day slavery etc, so change is needed across the board.

Would love to hear anyone's thoughts.!

[Dancer74]

please look at Jayne Knight my great life who campaigns and helps parents get proper supported living in place as the govt certainly does not. The govt does not care and simply steals our children into so called supportive living taking away funding to provide full time support simply sharing carers with others instead of independent living. There really needs to be a change. Sadly most of us who do try and campaign and change things by reporting and raising concerns end up gagged in court of protection.

[SaltandVinegar10 in reply to Dancer74]

Thank you for your reply. It is shocking what goes on. I have found Jayne Knight to connect with, thank you for that suggestion.

[MrsCrood]

Agree with every syllable, couldn't have said it better. Thank you.

[SaltandVinegar10 in reply to MrsCrood]

Thank you so much for your positive reply.

[Lucacielle]

Sounds wonderful...every word it exactly on what is now happening.

Im sure you have already done or considered it ... to send your post/plans to every authority.

[SaltandVinegar10 in reply to Lucacielle]

Thank you. I have so many people to connect with and approach but just waiting for our CIO to be formalised first.

[Chocolate-heals-all]

I’ve signed up.

What I see is a severe mismatch between supposed legal entitlement (to live anywhere, with appropriate support) and what is delivered (service which is often inadequate and sometimes disrespectful or worse - and pressure to go into segregated accommodation)

The Campholl communities are a rural version of what you describe. They are Christian, so they won’t be appropriate to everyone’s needs.

[SaltandVinegar10 in reply to Chocolate-heals-all]

Thank you so much. That is what I see and hear. There seems no meaningful choice at all. Our young people need to be safe and an integrated part of their communities. I'm sure Camphill communities are wonderful places, but far away from the communities that a great many people have grown up in. My son has grown up in a city and whilst enjoying country walks etc, has no real affinity to the countryside. He loves visiting museums and galleries and being close to public transport, he has independence in a way that he would never have living in a rural setting. I know it will work for many people, but it wouldn't work for him. Thank you for your engagement.